ADVANCE-C: A Qualitative Study of Experiences Caring for Nursing Home Residents with Advanced Dementia During the COVID-19 Pandemic.

OBJECTIVES: Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a multisite qualitative study of regionally diverse Nursing homes (NHs; N = 14) providing varied intensity of advanced dementia care. ADVANCE-C explored the experiences of NH staff and proxies during the COVID-19 pandemic. METHODS: Data collection occurred in five of the ADVANCE facilities located in Georgia (N = 3) and New York (N = 2). Semistructured qualitative interviews with NH staff (N = 38) and proxies of advanced dementia residents (N = 7) were conducted. Framework analyses explored five staff domains: care processes, decision making, organizational resources, vaccinations, and personal experience, and five proxy domains: connecting with residents, NH response, communicating with NH, decision making, and personal impact of the pandemic. RESULTS: Staff mentioned difficulties implementing infection control policies specifically for advanced dementia residents. Staff reported trust between the facility and proxies as critical in making decisions during the pandemic. All staff participants spoke about "coming together" to address persistent staffing shortages. Proxies described their role as an "emotional rollercoaster," emphasizing how hard it was being separate from their loved ones. The accommodations made for NH residents were not beneficial for those with advanced dementia. The majority of proxies felt NH staff were doing their best and expressed deep appreciation for their care. DISCUSSION: Caring for advanced dementia residents during the COVID-19 pandemic had unique challenges for both staff and proxies. Strategies for similar future crises should strive to balance best practices to contain the virus while maintaining family connections and person-centered care.

Nursing Home Staff Perceptions of End-of-Life Care for Residents With Advanced Dementia: A Multisite Qualitative Study.

Nursing homes (NHs) are an important site of death for residents with advanced dementia. Few studies have explored the experiences of NH staff about providing end-of-life care for residents with advanced dementia. This study aimed to describe NH staff perceptions on where end-of-life care should be delivered, the role of Medicare hospice care, and their experiences providing end-of-life care to residents with advanced dementia. Data from the Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life study were used to explore the study objectives. Semistructured interviews with 158 NH staff working in 13 NHs across the United States were analyzed. Most NH staff endorsed the NH as a better site of death for residents with advanced dementia compared with a hospital. They expressed mixed perceptions about hospice care. However, regardless of their role, the staff expressed experiencing difficult emotions while providing end-of-life care to residents with dementia because of the close attachments they had formed with them and bearing witness to their decline. The findings show that most NH staff have strong emotional attachments to their dying residents with dementia and prefer to care for them at the NH rather than transfer them to the hospital.

Association of Nursing Home Organizational Culture and Staff Perspectives With Variability in Advanced Dementia Care: The ADVANCE Study.

IMPORTANCE: Regional, facility, and racial and ethnic variability in intensity of care provided to nursing home residents with advanced dementia is well documented but poorly understood. OBJECTIVE: To assess the factors associated with facility and regional variation in the intensity of care for nursing home residents with advanced dementia. DESIGN, SETTING, AND PARTICIPANTS: In the ADVANCE (Assessment of Disparities and Variation for Alzheimer Disease Nursing Home Care at End of Life) qualitative study, conducted from June 1, 2018, to July 31, 2021, nationwide 2016-2017 Medicare Minimum Data Set information identified 4 hospital referral regions (HRRs) with high (n = 2) and low (n = 2) intensity of care for patients with advanced dementia based on hospital transfer and tube-feeding rates. Within those HRRs, 14 facilities providing relatively high-intensity and low-intensity care were recruited. A total of 169 nursing home staff members were interviewed, including administrators, directors of nursing, nurses, certified nursing assistants, social workers, occupational therapists, speech-language pathologists, dieticians, medical clinicians, and chaplains. MAIN OUTCOMES AND MEASURES: Data included 275 hours of observation, 169 staff interviews, and abstraction of public nursing home material (eg, websites). Framework analyses explored organizational factors and staff perceptions across HRRs and nursing homes in the following 4 domains: physical environment, care processes, decision-making processes, and implicit and explicit values. RESULTS: Among 169 staff members interviewed, 153 (90.5%) were women, the mean (SD) age was 47.6 (4.7) years, and 54 (32.0%) were Black. Tube-feeding rates ranged from 0% in 5 low-intensity facilities to 44.3% in 1 high-intensity facility, and hospital transfer rates ranged from 0 transfers per resident-year in 2 low-intensity facilities to 1.6 transfers per resident-year in 1 high-intensity facility. The proportion of Black residents in facilities ranged from 2.9% in 1 low-intensity facility to 71.6% in 1 high-intensity facility, and the proportion of Medicaid recipients ranged from 45.3% in 1 low-intensity facility to 81.3% in 1 high-intensity facility. Factors distinguishing facilities providing the lowest-intensity care from those providing the highest-intensity care facilities included more pleasant physical environment (eg, good repair and nonmalodorous), standardized advance care planning, greater staff engagement in shared decision-making, and staff implicit values unfavorable to tube feeding. Many staff perceptions were ubiquitous (eg, adequate staffing needs), with no distinct pattern across nursing homes or HRRs. Staff in all nursing homes expressed assumptions that proxies for Black residents were reluctant to engage in advance care planning and favored more aggressive care. Except in nursing homes providing the lowest-intensity care, many staff believed that feeding tubes prolonged life and had other clinical benefits. CONCLUSIONS AND RELEVANCE: This study found that variability in the care of patients with advanced dementia may be reduced by addressing modifiable nursing home factors, including enhancing support for low-resource facilities, standardizing advance care planning, and educating staff about evidence-based care and shared decision-making. Given pervasive staff biases toward proxies of Black residents, achieving health equity for nursing home residents with advanced dementia must be the goal behind all efforts aimed at reducing disparities in their care.